Children and young people with special educational needs and disabilities (SEND) have been particularly affected by the pandemic and associated lockdowns.

Many suffered isolation and had their access to education, health services and social, emotional and mental health support disrupted or withdrawn.

The Ask, Listen, Act project is a multi–disciplinary study undertaken by academics from Liverpool John Moores University, Edge Hill University and the University of Liverpool.

They found that, pre-pandemic, there were already stark inequalities and limitations in the provision of services for children with SEND.  

Following the announcement of the first lockdown in March 2020, findings suggest the problem was exacerbated, with education, mental health, and social care services downgraded or, in some cases, withdrawn altogether.

The researchers used a wide variety of sources in their information gathering. They reviewed existing evidence, and surveyed children, parents, carers and professionals including education staff, health and social care staff and those working within the local authority. They also held workshops in schools and within charitable organisations, where they met children and young people with SEND, parents/carers and professionals to gather their views.

Their wide-ranging findings included:

• Lockdown compounded existing special education needs and disabilities, for example many children with Attention Deficit Hyperactivity Disorder (ADHD) were unable to do the activities that allowed them to expend their energy, and many autistic children and young people struggled with the sudden change in routine and lack of ability to socialise.
• Parents/carers said a pre-existing lack of support and challenging access to SEND services was exacerbated during the pandemic. Many of their child’s health care appointments and therapies were cancelled, delayed, or moved online.
• Children and young people with SEND were reported as not being able to access the mental health support they needed, resulting in many reaching crisis levels.
• School places for children with SEND were reported as not being available during the first lockdown and many experienced a lack of support and communication from school during periods of online learning.
• Remote learning for children with SEND was extremely challenging, if not impossible, as it was inaccessible, and schoolwork was not always differentiated for their child’s needs.
• Professionals said that many children with SEND were not taken into consideration by decision-makers during the pandemic. Those interviewed said services were prevented from operating and that guidelines were unclear, inconsistent, and rapidly changing.
• Many professionals described how they had worked ‘over and above’ within very challenging circumstances to try and meet children’s needs.
• During the pandemic, professionals encountered more families of children with SEND in crisis and had concerns over safeguarding due to not being able to see children in person.

The team used a variety of methods to make sure the views and opinions of children and young people with SEND, their parents and professionals informed the study.

The online survey was completed by 55 children with SEND, 893 parent/carers, 163 health and social care professionals, 100 education, professionals and 44 local authority professionals.

Respondents were distributed across the UK; children had a broad range of SEND and a range of multi-disciplinary health and social care and educational professionals took part. Four children and young people with SEND, 10 parents and 15 professionals were involved in online semi-structured interviews and 20 children and young people with SEND, 11 parents/carers and 38 professionals took part in workshops.

Some of the responses from children, parents and professionals included:

• A child with SEND: “I could not use zoom like other children. I cannot see, and the sound is not enough. I could not follow the conversation. I really need to touch people to know what they are paying attention to.”
• The parent of a six-year-old boy who is deaf and has a developmental delay, explained: “It was frustrating because everything stopped, I mean literally everything. We’ve not seen as many professionals…It took away any kind of support that there was.”
• A mum, whose son has autism, ADHD and anxiety, said: “He went through a stage he had night terrors every night… It was very difficult, and [he] had some very dark times with his violent behaviour and anxiety that that was mostly aimed at me when I got home… I suppose he couldn’t vent his stress anywhere else because we were at home all the time.”
• A service manager for a charity, said: “It was frustrating, really frustrating. I didn’t feel like SEND or disability was taken into consideration. It was one rule for everybody… I just think that maybe there should have been exceptions to the rule from day one, being allowed to go out and access your support.”

Dr Emma Ashworth, Liverpool John Moores University, said: “Children and young people with SEND have had a particularly difficult experience during the pandemic – the changing rules and restrictions have had a huge impact on their mental health and wellbeing, education, social and emotional development, and access to healthcare services. There is much work to be done to better support children with SEND and their families during the pandemic.”

Dr Joanna Kirkby, Liverpool John Moores University, said: “Through our work with children and young people with SEND, their parents and professionals, we have seen how harmful (and on occasion devastating) the pandemic has been for some children and young people with SEND. At times, some children and young people with SEND received no support of any kind. I hope action can be taken quickly to increase support and improve provision for children and young people with SEND.”

Prof Lucy Bray, Edge Hill University, said: “I have felt very privileged to have been able to work with children and young people with SEND parents and professionals as part of this study. The pandemic has hit many children and young people with SEND and their families particularly hard and it will take many years, renewed investment and a new co-ordinated approach to services to make sure that their basic rights are met.”

Prof Amel Alghrani, University of Liverpool, said: “This is an important study which examines exactly what impact legislative changes made in response to the COVID had on one of the most vulnerable cohorts in society: children and young people with SEND and their families. Children with SEND and their parents/carers have been directly consulted and are at the heart of this study. It is imperative that their voices are now heard, their legal rights respected, and action taken.”

The study was supported through Liverpool Health Partners, a partnership of Universities and NHS organisations across Cheshire & Merseyside. The role of LHP is to unify clinical and academic expertise to improve population health outcomes and economic productivity. For more information contact Carianne.Hunt@lhch.nhs.uk

This study was funded by the National Institute for Health Research‘s (NIHR) Policy Research Programme (Recovery, Renewal, Reset: Research to inform policy responses to COVID-19 funding stream) in May 2021.

You can read the report summary here and its priorities here.